You are being asked to participate in a research study. Your participation in this research study is voluntary and you do not have to participate. This document contains important information about this study and what to expect if you decide to participate.  Please consider the information carefully. Feel free to ask questions before making your decision whether or not to participate.

The purpose of this form is to provide you information that may affect your decision as to whether or not you may want to participate in this research study.  The person performing the research will describe the study to you and answer all of your questions. Please read the information below and ask any questions you might have before deciding whether or not to give your permission to take part.  If you decide to be involved in this study, this form will be used to record your permission. 

Purpose

If you participate in this research study, you will be invited to complete a brief online questionnaire. You will then be asked to contribute materials related to your childbirth experience (a written account, oral history, transcript or any combination thereof). The archive’s administrator will review all contributed materials, normalize vocabulary terms and tag each oral history, transcription and document using the recommended and relevant terms. The administrator will also transcribe contributed oral histories upon request.  Participants who request the inclusion of a transcript will receive a copy of the interview transcript to allow for any edits or revisions to ensure an accurate representation of experience prior to uploading. All participants have the absolute right to not answer any questions and can request removal of a portion of or their entire childbirth story from the archive at any point.

The purpose of the Childbirth Archive is to provide immediate and searchable access to archived childbirth histories or stories. Currently there are very few places for women to collectively archive (record and store), preserve, and/or locate tagged childbirth stories. Parents of very young children are frequently isolated and often encouraged to remain at home until their child is at least 1 month old. In addition, new mothers experience a drastic and exhausting physical change as a result of childbirth, even in cases where little medical intervention was necessary. In some cases, this change can be further complicated by major surgery (c-section), blood loss, trauma, anxiety and depression, and even death. The Childbirth Archive aims to provide information, comfort and understanding to this isolated community during a physically and emotionally difficult time.

According to the World Health Organization, the United States has the highest rate of maternal mortality in the industrialized world. In addition to providing access to childbirth histories, the Childbirth Archive aims to record information about childbirth trends in United States, from the mother’s point of view. By doing so, the Childbirth Archive may provide insight or at least information about the current situation in the United States to future generations. The Childbirth Archive is designed to facilitate access to childbirth histories, not necessarily advice. New mothers receive enough unwelcome advice and should contact a doctor, not the internet, with any health questions.

Risks or Discomforts

This study is low-risk to the participants. Although childbirth is a potentially sensitive topic, participants are aware of the topic prior to the interview are not required to discuss any materials they are uncomfortable sharing. The information being sought includes a combination of personal experience and public record. All efforts will be made to protect the anonymity of participants. 

Potential risks, stress and/or discomforts of participation may include the possibility that discussing certain issues regarding childbirth may by upsetting to the participant.  All precautions will be used to insure participants are comfortable, aware of their right to discuss only what they wish, and their right to opt out or alter any portion of the project at any point. All materials, including audio recording of those wishing to contribute an oral history, will be public and maintained indefinitely, unless removal is requested by the participant. 

Benefits

The benefits which may reasonably be expected to result from this study are increased access to and the long term preservation of childbirth stories, the capturing of maternally sourced information on childbirth trends, and/or the reformation of some birth standards towards women’s preferences. 

Participants may experience the benefit of having shareable access to their personal childbirth story. Participants may enjoy being a part of something intended to benefit future society. Participants may also use the archive for during future pregnancies.

We cannot and do not guarantee or promise that you will receive any benefits from this study. 

Confidentiality of Information

All efforts will be made to protect the confidentiality of participants who wish to remain nameless. However, given the nature of childbirth stories and personal information, we cannot guarantee absolute confidentiality.

In order to insure continuity and provide confidentiality, each oral history and transcript will be assigned a unique, consecutive identification number associated with the related consent/contribution form. This number will be used as the name of all digital materials and folders. Access to this form and any other identifying information will be limited to the PI. Security precautions (secure passwords, antivirus software) will be utilized to protect the personal computers maintaining copies of confidential materials. Lastly, if at any point a participant would like their materials altered or removed from the archive, the lead archivist will make the requested change within one week of the request.

Limits to confidentiality

All of the information you provide will be confidential.  However, if we learn that you intend to harm yourself or others, including, but not limited to child or elder abuse/neglect, suicide ideation, or threats against others, we must report that to the authorities as required by law. 

Before you begin, please note that the data you provide may be collected and used by Qualtrics and the Childbirth Archive as per its privacy agreement. This research is only for U.S. residents over the age of 18. Please be mindful to respond in private and through a secured Internet connection for your privacy. Your confidentiality will be maintained to the degree permitted by the technology used. Specifically, no guarantees can be made regarding the interception of data sent via the Internet by any third parties.

Your name will not be used in any report. Identifiable research data will be encrypted and password protected.

Again, because of the nature of the data, it may be possible to deduce your identity; however, there will be no attempt to do so and your data will be reported in a way that will not identify you.

Given the public nature of an archive, information that may unintentionally identify you may be used for future research or shared with another researcher for future research studies without additional consent. Again, if at any point a participant would like their materials altered or removed from the archive, the lead archivist will make the requested change within one week of the request.

Government or university staff sometimes review studies such as this one to make sure they are being done safely and legally.  If a review of this study takes place, your records may be examined. The reviewers will protect your privacy. The study records will not be used to put you at legal risk of harm. 

Use of your information for future research

If requested, all identifiable information (e.g., your name, date of birth) will be removed from the information or samples collected in this project.  After we remove all identifiers, the information or samples may be used for future research or shared with other researchers without your additional informed consent.

Data Sharing

De-identified data from this study may be shared with the research community at large to advance science and health. We will remove or code any personal information (e.g., your name, date of birth) that could identify you before files are shared with other researchers to ensure that, by current scientific standards and known methods, no one will be able to identify you from the information or samples we share. Despite these measures, we cannot guarantee anonymity of your personal data.

Questions

For questions, concerns, or complaints about the study you may contact Medellee Antonioli, Master’s student in Library and Information Science at the University of Denver, medellee.antonioli@du.edu, 406-274-0102.

If you are not satisfied with how this study is being conducted, or if you have any concerns, complaints, or general questions about the research or your rights as a participant, please contact the University of Denver (DU) Institutional Review Board to speak to someone independent of the research team at 303-871-2121 or email at IRBAdmin@du.edu.

I have read (or someone has read to me) this form, and I am aware that I am being asked to participate in a research study.  I have had the opportunity to ask questions and have had them answered to my satisfaction. I voluntarily agree to participate in this study. 

I am not giving up any legal rights by agreeing to these terms. I will be given a copy of this form upon request.